It was a two-and-a-half-year odyssey from the beginning of my chronic
pain to my fibromyalgia diagnosis coupled with being newly predisposed for soft
tissue injuries. This leaves me more easily injured and then in a lot of pain
from those injuries; all of this clarified what I’m living with. Then, it was
another six months to then understand my new reality and to even begin to
figure out how to work with it. Emotionally, this has been tough, but one of
the most difficult parts was sitting down to talk to my kids about it.
I’ve tried hard throughout my girls’ lives to ensure that they grow up
feeling safe, nurtured, loved, and free to focus on just being kids. But my
diagnoses left me feeling as if I were failing them: I can’t be as strong for
them as I’ve always been. I can’t give them all of the experiences and
adventures that filled our past years. I’ll need more help from them, forcing
them to quickly grow faster than they should. The realization of the various
ways and moments that will change washed over me, and left me devastated for
weeks. My inescapable conclusion was that, instead of providing them the
foundation for their growth and for them to go out and achieve their dreams, I
was creating a world suddenly harsher and scarier, and I’d leave them more
afraid to engage with the broader world and less prepared to do so. As a
parent, feeling like a failure is soul-crushing.
Still, I’d hit a point at which my new limitations were obvious, and
“injuries” can’t last forever. So, it was time to sit them down and explain
things. I didn’t feel prepared, so I researched how to do this. Some conditions
have great literature to support conversations with kids, but fibromyalgia
isn’t one of them. It isn’t a well-understood condition, and the chronic pain, and
impacts to digestion, immune system, energy, and mental functioning vary
significantly from person to person. A doctor and the therapist I was using for
pain management support helped identify four key aspects to the discussion: first,
be honest; second, talk in an age-appropriate way; third, make the diagnosis
feel tangible instead of some abstract medical term; lastly, ensure their
understanding through interactive discussion and letting them drive the focus.
After practicing in my head and with my wife enough to feel like I
established some ways to approach this discussion, a boring Saturday lent
itself to sitting down with them. It was scary and emotional, but once into the
discussion, it was important to simply immerse myself in it and let the
conversation develop organically.
My two daughters are 11 and 13 years old, so they’re old enough to
understand a lot but not enough to possess a deep body of knowledge. I helped
them actively relate to some of my issues by using certain illnesses and
injuries they’ve experienced, and then explaining that my situation permanently
combines those things. They also helped steer the conversation by adding other injuries
or speaking to how they’d feel in certain situations, which confirmed their understanding.
When speaking to how life will change, it required candidly admitting
that I’ll need their help more often, and they’ll have to take on more
responsibilities because I can’t be the person I’ve been up until now. While
that was heavy, there were also a couple of interesting outcomes. One was
creating laughter amidst a serious and emotional situation, such as
proclaiming, “Good news, girls! You know how you hate backpacking trips? Well,
no need to worry anymore!”
Another unexpected outcome was the empowerment that this can bring. I’ve
tried hard to create situations that will give the girls experiences and tools
that they can build on as they grow, as they face bigger challenges, and as
they have and pursue their dreams. Now that I need to approach things
differently, I’m unclear how best to continue such efforts. This means we’ll
all need to work together to experiment on how best to push the kids outside of
their comfort zones. We’ll need to collaborate more on how best to create new
experiences, and how to construct the types of adventures that they can engage
in and grow from. This creates a respect and forum for their developing abilities.
The discussion went on longer than I’d planned, and it wasn’t perfect.
But I chose to not beat myself up. Life is sometimes messy and is seldom
perfect. It was an emotional buildup and a draining conversation. But I
conveyed what I needed to, the girls understood and weren’t freaked out, and it
transparently set the stage for whatever comes next. I think it’s important to
acknowledge successes wherever I can, and this was an important one for me to
declare.
This diagnosis drives home how much life can shift on you. It also
highlights how your life is a combination of the events impacting you, your decisions
about how to perceive those events, and the ways in which you choose to
continue living.
I still have no idea where everything is headed, nor how much my
diagnoses will ultimately impact my future. But I know it’s important to still
live as vibrantly as I can. Now that my diagnosis is out in the open with my
kids, I can take pride in modeling for my daughters that I will push myself, persevere,
and continue to seek ways to engage with the world around me. If my girls draw
anything from my example, it strikes me as a way to convert an awful situation
into a point of pride.
So, for now, I’m just going to be the best dad that I can be, whatever
my situation, and take things one step at a time.
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